Gilenya

[jandrews]

I am looking for feedback on Gilenya. Success? Side effects? How long have you been on it?

[jlardie13]

I've been gilenya for about 3 yrs now. No side effects. Works as well as copaxone and NO SHOTS! The pharmacy messed up my refill earlier this year and I went 10 - 12 days without it. I should have called pharmacy sooner but had set a date for delivery and kept expecting it each day. Anyway, anout 6 wks later with increased stress and lack of sleep, I had my first exacerbation in 13 yrs. And it was bad. Have continued to take it and careful to get enough rest and no further problems.

[Bubbles52 in reply to jlardie13]

How long have you had MS? What type of MS do you have?? What are the side

Affects? Can I ask how old you are and if you are active or mobile?

Thanks so much❣️🏋🏼

[faydin46 in reply to jlardie13]

Good to hear. I am planning to take Gilenya but wanted to know if I should do any special eye tests or exams because of Macular Edema as a side effect

[Ctownsend1]

I was on Gilenya for about 7 months. I had to go to the hospital for abdominal pain. My lipase levels (pancreas enzyme) and my liver enzymes were through the roof. My neurologist said the Gilenya most likely caused it. I was taken off of it and my enzymes immediately went back to normal. Only about 10% of people taking it will have this problem, but gilenya is processed by the liver so it can cause problems. I was off of medicine for 3 months until everything was absolutely normal and to make sure I didn't have any other problems. I was just put on Tecfidera last month. Only have 1 side effect of flushing but it's not bad at all. I'm hoping it stops and this one works. Good luck with the medicine, I really hope it works for you. It's a very new medication so most Dr's outside of MS specialists haven't heard of it and know nothing about it. You most likely will have to go into the Dr's office for the first dose so they can monitor your blood pressure as it can lower it. It's very expensive too. $250 a pill so insurance may take a while to approve it.

[Sukie427 in reply to Ctownsend1]

I had the exact same experience with Gilenya. The dr. reported the stomach pain, which, like yours, did not begin until I had been on it for 7-8 mos. The pain was so bad I had to go to the ER. Novartis had not listed this as a side effect and they said it was the first report of it. The dr. also reported it to the FDA. I'm not sure about my liver enzymes, but I know that my immune system dropped so low that I had to see an immunologist to make sure that it wasn't something else. And I consulted a gastroenterologist who did MRIs and a colonoscopy; a urogynecologist who did kidney ultrasounds and a bladder cystoscopy, and finally had exploratory surgery to see if there was abdominal scar tissue which could be the cause, Nothing. So I went off the Gilenya and it cleared up also in about 3 months. Thanks for letting me know that I am not the only one who had this side effect!

[Ctownsend1 in reply to Sukie427]

Yeah I had to go to the ER. They thought I had pancreatitis because of my lipase levels and the pain. Had a CT done which showed it wasn't my pancreas, after I had been off food for 36 hours. A GI dr came and talked to me and said it was my ulcer that was affected, but the liver and pancreas enzymes were so out of control she did research into Gilenya and saw a report that 10% of people at 6+ months started having crazy enzyme levels for the liver and pancreas and pain. The tecfidera I'm taking is supposed to be pretty good. I now have to be very careful with any medicine I take. If it's processed by the liver I most likely can't take it because the medicine compromised my liver any dr is worried that my liver may be damaged and they don't want anything to affect it again. Good thing I don't drink! Nope you're not al9ne, but we are of a very few apparently. At least a few reported. I think my neurologist reported it too.

[carrthompson83]

I been on it for 5 years. Side effects I had was sleepiness and some times headaches. But otherwise it is fine. Nothing compare to those awful shots. But when you first take it they have monitor your blood pressure. This is a dangerous drug so you have to be careful in taking it.

[gpersiani]

I War on gylenia for 4 years and it s working fine,no side effects. I take one pill every morning

[Fancy1959]

jandrews, Hello, it's Fancy1959. I simply wanted to say hello since I haven't spoken posted with you before. I wanted to invite you to become part of the ever broadening MS family we are creating on this website. I have never been on Gilenya so I cannot share any feedback with you on it. I just wanted to let you know that together we are stronger and that we must all stick together in this fight against this monster we called MS. So I invite you to become our newest MS Warrior and remember we never give in, we never give up, we fight on like a MS Warrior, fight on!

[lauranell2u]

I made it 5 days. LoL. Side effects were bad from day 1 for me. It doesn't seem to be the norm for most.

[Iona60]

I've been on it for almost 2 months. Have more energy than Copaxone, but get the "gloomies" every few days when med wears off in late afternoon. Anyone else get this? I'm worried about my lymphocytes that are quickly decreasing. Anyone know how low they will let them go?

[Sukie427]

I started on Gilenya when I was first diagnosed in 2010. I thought it was working great; I even felt as if I was gaining back some of what I had lost, although the dr advised that this would not happen. I think that I was on it for about 7-8 mos. and then it began to tear my stomach up so I had to go off of it. I am now on Tecfidera which seems to be doing its job, but I did have a few relapses on it and I don't feel as if I've gained anything back that I lost. I think Gilenya is a great drug if you can tolerate it. It does knock your immune system into the basement, though. I have not had that problem with Gilenya.

[Sukie427 in reply to Sukie427]

I mean with Tecfidera!

[kaldinger]

I was on Gilenya for 2 years. Everything seemed great. I had MRI's every 6 months of the brain with positive results. Back in July I had an MRI and it looked great. A week after the MRI I started getting numb in my right foot. A week later it was from the waste down. I had another MRI except this time it was of the lower lumbar. MRI should active lesions. So, for me Gilenya worked great for the brain but not for the spine. I'm now getting ready to start Rebif.

[KrystinT]

I tried Gilenya and was only taking it for about 4 months before I noticed my blood pressure skyrocketing. If you decided to try it, please pay attention to yours. An increase in blood pressure is way down on the side effects list for Gilenya, but please keep it in mind!

[Hidden in reply to KrystinT]

I have been on gilenya for 3 mo now and my blood pressure went up as well and now i have to monitor it at home and visit with my dr every couple of months to check on it. I looked at my past bp numbers and it wasn't until i started gilenya that it went up.

[Froggiechick]

This is what the dr wants to start me on. After reading the comments I'm a little nervous to start it! I go for my MRI next week and back to the dr on oct 7th. I already have tummy problems to begin with!

[Wrkngwmn]

I have been on it for almost 6 years. I started it the week it was approved. Before that I was on cooaxone for several years and beta seton for several years. I love Gulenya. I feel better tvab I did for years. I had some headaches the first six months or so but that was it. I love it!

[Sleek78]

Been on it for about 4 years. Might get headaches and don't sleep well. But I don't think it's the right one for me cause my walking is getting worse. So I don't know

[Bubbles52]

It seems like I have tried everything but that, lol . I tried Aubagio and did not care for the side affects, but I was in a stressful relationship

At the same time not sure which caused the problems.😌

[April-1995MSWarrior]

Tecfidera and my body were not a good combo... I too, am getting ready to start Gilenya (my 7th therapy). I'm nervous and I am hoping for good results. My system is so sensitive to everything. Praying that everyone with MS will get to say, I used to have that.

[agapepilgrim]

Diagnosed with RRMS on 6/6/16 but told I've probably had for 53 years when I first had temporary blindness when 17. Diagnosed with severe fibromyalgia 22 years ago, which MS neurologist states should have been diagnosed as MS. Diagnosed with chronic bronchitis 43 years ago. I was put on Aubagio 9/1, bronchitis flared up 10/8, treated with antibiotics, steroids, etc., no better. Visited neurologist 12/4, stated Aubagio causing severe bronchitis, stopped immediately. He said cannot be put on anything until bronchitis clears up. Pleurisy flared up this morning - now that is PAIN! Thankfully, the nebulizer treatments is keeping that in control. Another flare up of pleurisy and this old gal is going to ER. Pleurisy is like labor pains in your lungs! Neurologist says he wants me to try Capoxone when I get "well." I have read all the bad affects of those shots, and I DO NOT want to do that! But he said capozone doesn't affect immune system (which I obviously have a very low, inactive immune system by this time in my long life of living with the monster).

[Bubbles52 in reply to agapepilgrim]

Have you Tried Beta Seron beta 1b? I also went blind for 5 month Optic Neuritis, in the hospital for Solumedroul 1000 mg for 4 day and vision came back. On Beta Seron for over 15 years and helps.

[TLeannM]

I started gilenya almost a month ago. Reading all the side effects scared the mess out of me!!! Still does!! I can say the first week I was on it, I felt the best I had in a while. My neuro had also put me on nuvigil for the fatigue. But after that first week, I feel myself getting tired in the afternoon and then not being able to go to sleep at night. I've had some headaches since being on it. I had them before starting it though, but these seem to be different. When I get one, I start thinking about the side effects and wonder if something else is going on. Plus the right side of my mouth has been numb for the past two weeks. Not sure what that's about, especially if the Med is supposed to slow down any progression. I think I will give it a little longer, then move on to something else. At least for peace of mind, bc I don't like the feeling that every time, I have a pain in my brain, I start thinking of the bad side effects that could happen. I don't know if this helped or not. I'm glad you asked, I read the other replies and learned a lot.